753587

research-article2018
QHRXXX10.1177/1049732317753587Qualitative Health ResearchVan Schoors et al.

Research Article
Qualitative Health Research

Parents’ Perspectives of Changes

2018, Vol. 28(8) 1229­–1241
© The Author(s) 2018
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DOI: 10.1177/1049732317753587
https://doi.org/10.1177/1049732317753587

a Pediatric Cancer Diagnosis: A Multi journals.sagepub.com/home/qhr

Family Member Interview Analysis

Marieke Van Schoors1, Jan De Mol2, Hanne Morren3,

Lesley L. Verhofstadt1, Liesbet Goubert1, and Hanna Van Parys1,3

Abstract
Pediatric cancer is a life-threatening disease that challenges the life of the diagnosed child, the parents, and possible
siblings. Moreover, it also places considerable demands on family life. The aim of this study was to explore changes in
the family functioning after a pediatric cancer diagnosis. Ten couples who had a child with leukemia or non-Hodgkin
lymphoma were interviewed individually about their experiences. Interviews were semistructured, and the data were
analyzed using Multi Family Member Interview Analysis. Three themes emerged from the data: (a) Family Cohesion:
Strengthened Versus Fragmented; (b) Educational Norms and Values: Overindulgence Versus Being Stricter, and
(c) Normality: Loss Versus Preservation. The conflicting dynamics present in these emerging themes exemplify the
complexity of this process of family adaptation. This study illustrates the need to take into account the family level, as
well as the conflicting feelings parents may experience after a pediatric cancer diagnosis.

Keywords
children; illness and disease; cancer; families; qualitative research; interviews; Western Europe

Introduction literature (Carr, 2012), children are embedded in a family,

Pediatric cancer is the second most common cause of
death in children in developed countries (Kaatsch, 2010).
Although this disease used to be mostly fatal, an increas-
ing number of children now survive—currently around
82% of all cancer-affected children survive for 5 or more
years (Cancer Research UK, 2010). Like all chronic dis-
eases, cancer may have a significant impact on the life of
the diagnosed child (Kazak et al., 2001; Kestler &
LoBiondo-Wood, 2012) and the family members
(Alderfer et al., 2010; Grootenhuis & Last, 1997; Pai
et al., 2007). Therefore, a growing number of studies
have focused on detrimental and protective factors for the
adaptation of patients (e.g., Gliga, Balan, & Goloiu,
2016), siblings (e.g., Barrera, Fleming, & Khan, 2004),
and parents (e.g., Caes et al., 2014; Wijnberg-Williams,
Van de Wiel, Kamps, & Hoekstra-Weebers, 2015), to pro-
mote long-term resilience in all family members and help
families cope with the disease more effectively. In addi-
tion, according to recent systematic reviews, certain fam-
ily characteristics (e.g., cohesion and adaptability) may
determine the family members’ ability to adapt to life
after diagnosis (Long & Marsland, 2011; Van Schoors
et al., 2017). Indeed, according to the family psychology
and within families, individual family members influence
each another. This idea is also embedded within various
family systems models often applied to chronic illness
populations (Van Schoors et al., 2017). For example, the
social ecology model (Bronfenbrenner, 1977) illustrates
how the child is nested within and influenced by the fam-
ily system in addition to other social systems, whereas the
double ABCX model (McCubbin et al., 1980) posits that
certain aspects of family functioning can either foster or
undermine individual adjustment to illness or disability.
In the case of a childhood cancer diagnosis, families must
be flexible in their roles and responsibilities, communi-
cate effectively, manage emotions, and successfully work
as a team to meet treatment demands (Kazak et al., 2004;
Marcus, 2012), demonstrating the impact on the family
1
Ghent University, Ghent, Belgium
2
Université Catholic de Louvain, Louvain-la-Neuve, Belgium
3
Ghent University Hospital, Ghent, Belgium
Corresponding Author:
Marieke Van Schoors, Department of Experimental Clinical and
Health Psychology, Ghent University, H. Dunantlaan 2, B-9000 Ghent,
Belgium.
Email: marieke.vanschoors@ugent.be
1230 Qualitative Health Research 28(8)
level and the role of family functioning as predictor of
individual family member adaptation (Van Schoors et al.,
2017; Van Schoors, Caes, Verhofstadt, Goubert, &
Alderfer, 2015).
The existing research in pediatric cancer is limited in
three ways. First, most research on the subject to date has
assessed the connection between detrimental and protec-
tive factors and the participants’ adaptability to life after
diagnosis, using questionnaires and heterogeneous sam-
ples, covering a broad range of diagnoses, child ages, and
time periods since diagnosis or treatment (Van Schoors
et al., 2015). These methods, however, cannot capture the
unique experience of a family confronted with such a diag-
nosis, as well as the meaning that family members give to
their unique situation (Smith, Flowers, & Larkin, 2009).
Second, despite a growing awareness regarding the role of
family functioning in the context of pediatric cancer, most
studies tend to overlook the family system level and focus
solely on the individual level (e.g., the diagnosed child or
their parents). This approach has limitations when applied
to a clinical context or screening strategies, as, for exam-
ple, literature has already revealed associations between
(mal)adaptive family functioning and child adjustment
problems (Van Schoors et al., 2017). Third, the majority of
studies that focus on the family functioning only included
responses from a single family member. This approach,
however, may not adequately reflect the family life in its
entirety (Van Schoors et al., 2015).
To address these limitations, the current qualitative
study was conducted among parents of children with leu-
kemia or non-Hodgkin lymphoma (a) to provide insight
into personal accounts of parents’ experiences and (b) to
obtain in-depth descriptions of parents’ perspectives on
changes in family functioning after a pediatric cancer
diagnosis. In addition, (c) one-to-one interviews were
conducted with the mother and father separately. This
allowed each parent to provide their own perspective on
shifts in family life postdiagnosis (Eisikovits & Koren,
2010), without having to factor in their partner’s feelings
(Morris, 2001).
Method
Multi Family Member Interview Analysis (MFMIA; Van
Parys, Provoost, De Sutter, Pennings, & Buysse, 2017)
was used as a methodological framework to analyze the
individual interviews, focusing on the couple as the unit
of analysis. This approach takes into account ethical and
methodological challenges inherent to interviewing cou-
ples (Taylor & de Vocht, 2011; Ummel & Achille, 2016)
and has proved effective in studies that analyze experi-
ences shared by a couple, particularly when assessing
sensitive topics such as adjustment to an illness (Eisikovits
& Koren, 2010).
Participants
Ten married couples with children diagnosed with leuke-
mia or non-Hodgkin lymphoma participated in the study.
They were all Caucasian, living in the Flemish part of
Belgium, and between 37 and 56 years of age, representing
a reasonably homogeneous sample that conforms to the
requirements of interpretative phenomenological analysis
(IPA; Smith et al., 2009). The children (seven males and
three females) were diagnosed with acute lymphoblastic
leukemia (N = 6), acute myeloid leukemia (N = 1), or non-
Hodgkin lymphoma (N = 3). The diagnosed child’s age
ranged from 4 to 16 years. Time since diagnosis varied
from 6 to 33 months (M = 21.6). In two families, the diag-
nosed child was their only child. The remaining families
had two (three families), three (three families), or four (two
families) children. Ethical approval from the University
Hospitals of Ghent, Brussels, Antwerp, and Louvain had
been secured for the study, and the appropriate informed
consent forms were obtained.
Data Collection
This study is part of a larger ongoing study in Flanders
(Belgium) examining the impact of a pediatric cancer diag-
nosis on families, that is, the “UGhent Families and
Childhood Cancer study.” For this large-scale study, families
of children diagnosed with leukemia or non-Hodgkin lym-
phoma between the age of 1 and 18 years were invited to
take part in a longitudinal survey. Exclusion criteria were as
follows: (a) not speaking Dutch, (b) expression of a develop-
mental disorder in the diagnosed child, and (c) relapse. All
participating parents (N = 173 individuals, including 55
couples) were subsequently invited to complete an interview
about the impact of the cancer diagnosis on the functioning
of their family. In 33 of the participating couples (60%), both
partners agreed to attend an interview. Ten of these couples
were randomly selected and contacted by H.M. All inter-
views were conducted by the same interviewer (H.M.), were
audio recorded, and lasted 60 to 120 minutes. Verbatim tran-
scripts of these interviews served as the raw data for this
study. All interviews were based on an interview schedule
and consisted of open-ended questions about (a) the experi-
ence of the diagnostic and treatment process, (b) the impact
of the diagnosis on the parent, (c) the family relationships,
and (d) the family functioning (interview details available
upon request). The participants’ experiential accounts were
facilitated by prompts, to encourage the participants to give
personal accounts (Smith et al., 2009).
Analysis
Data consisted of one-to-one interviews with each mother
and father separately about the impact of the cancer
Van Schoors et al. 1231
diagnosis on their family functioning. In addition to the
transcripts, further data were supplied by a task that
required the participants to demonstrate the emotional
bond between their family members through arranging
puppets (i.e., figural technique based on the Family
System Test; Gehring & Wyler, 1986): The closer they
positioned the puppets, the stronger the family cohesion.
The results of the task were referred to throughout the
interview and informed data analysis.
Inspired by IPA (Smith et al., 2009) and dyadic inter-
view analysis (Eisikovits & Koren, 2010), MFMIA (Van
Parys et al., 2017) allows detailed and systematic analysis
of shared family experiences (Smith, 1999; Van Parys
et al., 2017). In a first phase, all interviews were analyzed
separately, using the principles of IPA. Each transcript
was read a number of times by M.V.S. to familiarize her-
self with the participant’s account. The transcript was
then annotated with her initial observations. Next, these
initial notes (e.g., “it seems important for this father to
continue the siblings’ hobbies”) were translated into more
general themes (e.g., “life should go on”). Then, parallels
were explored between these emerging themes. This ana-
lytical and theoretical step results in a clustering of
themes for each of the cases. This process was repeated
for each case. At the second stage, when each individual
transcript had been analyzed, themes that were relevant to
each couple, so within couples, were identified by com-
bining the themes of both partners. In a third phase, we
searched for parallel themes between couples from differ-
ent families. The final list of subordinate and superordi-
nate themes reflects patterns of convergence between
different couples, so across couples, based on analysis of
unique aspects of each parent’s and each couple’s experi-
ences. As a consequence, we were not interested in gen-
der differences, but only in the complex feelings
experienced by a couple following a pediatric cancer
diagnosis. Finally, all themes were translated into a writ-
ten account, elaborating on the analysis and illustrating it
with direct quotes from the participants. Pseudonyms
were given to protect the anonymity of the participants.
As interpretations may be influenced by personal
experiences and one’s own theoretical background, a
team of auditors (H.V.P. and J.D.M.) was
invited to challenge the way M.V.S. constructed themes
and subthemes at several points in the analysis (Hill,
Thompson, & Nutt-Williams, 1997) and to assess to what
extent the analysis has been conducted systematically,
transparently, and credibly (see Smith et al., 2009 for
more details on IPA). M.V.S., who analyzed the tran-
scripts, is a clinical psychologist and PhD student. She is
also trained in psycho-oncology, and through her PhD is
in regular contact with staff and families in pediatric can-
cer departments in Flanders. H.V.P. is a clinical psycholo-
gist and postdoctoral researcher with experience in
qualitative research in the field of family psychology and
family therapy. She was the first auditor for this study.
J.D.M. is a clinical psychologist and associate professor
who specializes in qualitative research. In the study, he
functioned as the second auditor and notably contributed
to the analysis of emergent themes.
Results
The changes in the family functioning perceived by par-
ents were clustered into three superordinate themes: (a)
Family Cohesion: Strengthened Versus Fragmented, (b)
Educational Norms and Values: Overindulgence Versus
Being Stricter, and (c) Normality: Loss Versus
Preservation. Each of these themes comprised several
subordinate themes (see Figure 1). In addition, the com-
plexity of the family adaptation process after a pediatric
cancer diagnosis was marked by conflicting dynamics
within these emerging themes. Specifically, in the first
theme, the family is perceived as a stronger unit. However,
at the same time, fragmentations in the family unit are
also experienced, including a shift in focus toward the
diagnosed child, at the cost of attention on the family as a
whole, the siblings, and the couple themselves. In the sec-
ond theme, parents identify the need for a new parenting
approach, one that compensates for the suffering of the
diagnosed child by overindulgence. At the same time,
however, parents believe the child will heal and feel
responsible for the child becoming a responsible adult.
Therefore, parents adopt a stricter parenting approach
than prediagnosis, to compensate for their overindul-
gence. The third theme articulates the overwhelming
impact of the cancer diagnosis on the family, which is
often described by the parents as “nothing is normal any-
more.” However, at the same time, families tend to strive
for normality and try to safeguard the normal life of fam-
ily members.
Family Cohesion: Strengthened Versus
Fragmented
Being closer as a family.  For most parents, the illness drew
their family members closer together. This increased
closeness was, for some parents, most notable at the dif-
ficult moments throughout the illness, as at those times
family members stuck together and supported each other.
I do think that, in the end, we were a closer family, we were
a closed circle and not much could come between us.
(Mother of a boy, 14 years)
For this mother, support was provided by the family
itself. Visualized as a closed circle, family members stood
close together, with limited space for others to join “the
1232 Qualitative Health Research 28(8)
Figure 1.  Superordinate and subordinate themes.
circle” or to come between them. As a consequence, it
may be difficult for others (e.g., friends) to understand
how these families feel and how they could help. In addi-
tion, some parents not only described their family as
growing closer postdiagnosis but also as playing a more
important role. They recalled an increased desire to spend
more time together as a family, instead of (for example)
focusing on their careers.
The world stopped turning. I enjoy life more. Let’s say, I
used to live for my job and my career, but now I want to
enjoy things more. Enjoying it for the full 100% and going
on a holiday with the children. (Father of a boy, 4 years)
These parents started to change their attitude to life: Their
family came to play a major role in their sense of self, and
extrafamilial things became less important.
Fragmentation of the Family Unit
From the moment of the cancer diagnosis, the diagnosed
child became the center of focus in the family. As a con-
sequence, all parental time and attention were focused on
this child, strengthening the bond between parent(s) and
patient. At the same time, however, this shift in focus
often puts a strain on relationships with healthy siblings,
and as marital partners, creating fragmentations in the
idea of “the family as one unit.”
Focus on the diagnosed child.  Due to the fatal character of
a cancer diagnosis, the parental desire to divide time and
attention equally over the children changed in a merely
unique focus on the diagnosed child. This was, for exam-
ple, described by both parents of a 14-year-old boy:
You just focus on that child. Like being there for him when
he feels down, to cheer him up again. (Mother)
Rick actually always comes first. (Father)
In all families, the pediatric cancer diagnosis resulted in a
stronger emotional bond between the parent(s) and diag-
nosed child, whereas the relationship between parent and
siblings remained unchanged.
Victor made me a father, and I’m very grateful to him for
that. He used to be a real pain in the ass, believe me. I
loved him and he didn’t love me. And what happened
with the illness, we became a lot closer. (Father of a boy,
6 years)
Parents seemed to struggle with this shift in attention
to one child at the expense of the others. Given that
such parental behavior differs from the general norma-
tive expectations that each child will be loved in the
same way, some parents tried to rationalize their
behavior. For example, parents explained the increased
closeness between themselves and the diagnosed child
as a result of the child’s increased vulnerability. After
all, due to the side effects of the treatment, most chil-
dren undergoing chemotherapy could no longer take
care of themselves.
Van Schoors et al. 1233
I suppose that now I have a much stronger bond with my son
than most parents would have with their eldest child.
Because, right before puberty, so drastic, wiping his bum
again . . . (Father of a boy, 14 years)
In some families, a different impact on the bond between
diagnosed child and each of the parents was identified.
Parents attributed this to the fact that on a couple level,
one parent became the main caregiver of the diagnosed
child and quit his or her job to accompany the child to the
hospital, whereas the other parent continued his or her
work to guarantee financial security. The bond between
the diagnosed child and the main caregiver was strength-
ened, whereas the impact on the bond with the other par-
ent was less pronounced.
He’s much more attached to my wife these days because she
has been at home for the whole period. She’s always been
with him so… But I think it’s normal, that the one they see
the most . . . (Father of a boy, 4 years)
Finally, the continual presence of the carer tended to
result in enmeshment. Children may become used to the
constant presence and help of this parent, making the
transition to autonomy a greater challenge.
Due to the fact that you’re together 24/7 for half a year, and
also supporting her in difficult moments, because those
injections are not much fun. So Mummy’s there for
everything and in the long run Mummy needs to be there for
the stupidest things, things she could do perfectly well
herself. (Mother of a girl, 5 years)
Little time together as a family.  In many families, the par-
ents worked hard to ensure that one of them was always
at hospital, accompanying the diagnosed child, whereas
the other stayed at home with the siblings or went to
work. These roles were often switched regularly, so both
parents could support the diagnosed child and take care of
the siblings.
My husband and I alternated: I stayed with Talia in the
hospital for a couple of days and then I went home for a
moment so the other children could see me as well and then
my husband was in the hospital. (Mother of a girl, 5 years)
Aside from being preoccupied with the care of the diag-
nosed child and the desire to spend as much time as pos-
sible with this child, parents were also concerned with
their parental duty to any siblings. They seemed to strug-
gle with their desire to always accompany the diagnosed
child, therefore not providing adequate care for the sib-
lings. In addition, parents reported feeling guilty and
obligated to divide their time and attention between all
children. This pursuit of a balance was a common theme
among the couples.
At the beginning, it’s really hard, you need to find a balance
between the hospital admissions and time at home with the
other children, somehow trying to be one family. (Mother of
a boy, 4 years)
The words “trying to be one family” are notable and recur
in other interviews. However, the impossibility of caring
for the diagnosed child and maintaining their parental
role toward the siblings could cause fragmentation of the
family unit. The emotional struggle aside, it also was
practically impossible for parents to be simultaneously at
the hospital and at home. Consequently, it seemed
unavoidable for most that the family relationships would
become strained:
In the beginning, your family life falls apart; boom, you fall
down an abyss so to speak. (Father of a boy, 14 years)
“There was no sibling.”  The disease not only resulted in
less family time but also specifically in less parental time
and attention for any siblings. During treatment, siblings
were “in the background” of the family.
A huge amount of your time and attention goes to the one
child undergoing treatment, and the other children get, yeah,
they’re a little bit in the background. (Father of a girl, 5
years)
Although parental attention was mainly focused on the
diagnosed child, families differed in their approaches to
the siblings. In two families, the sibling was a newborn
baby, and because of breastfeeding, the baby was always
with the mother, whereas the father barely saw them.
Both parents of a 6-year-old boy reported,
There was no relationship with [name sibling]—that really
was something, there was no daughter right. (Father)
I was at the hospital with two children, because at that time
I still breastfed her, so it all was a bit crazy. (Mother)
In addition, parents indicated that the siblings had to cope
with this extreme stressor with only limited parental sup-
port. And although parents were aware of this situation
and felt guilty about it, they saw no other solution at that
time.
The treatment is so intensive and relatively little attention
was dedicated to [name sibling]. That’s what I feel guilty
about. He had to cope without us. I really struggle with
that. I just hope that he will not blame us for it later, that we
weren’t there enough for him. And if it gets that far, and he
takes it badly, then I will be very humble and not try to find
excuses. Then I will say “you’re right. But I don’t know
how we could have done it differently.” (Father of a boy, 9
years)
1234 Qualitative Health Research 28(8)
Apart from feelings of guilt, parents also expressed a
worry that they would later be blamed by their other chil-
dren. This not only seemed unavoidable but also under-
standable to the parents. In addition, we noted that in the
context of pediatric cancer, parents are confronted with
overwhelming feelings of helplessness and situations in
which they need to depend on others. For example, in the
case of treatment of the diagnosed child, parents depend
on the medical team; and to fully meet the needs of the
siblings, parents depend on others to take care of them
(see section “Grandparents taking over parental roles”).
Consequently, parents did what they thought was best and
could only hope the sibling would understand, both now
and later in life.
Grandparents taking over parental roles.  In most families,
other family members took care of the siblings, helping
them to cope with this life event.
I think the biggest change was for the two eldest, because in
that period, they were mostly looked after and brought up by
their grandparents. (Father of a girl, 5 years)
It is unclear from the data whether involved grandpar-
ents enabled parents to spend as much as possible in
the hospital or whether they merely filled the parental
vacuum. Nevertheless, parents always remained com-
mitted to the siblings’ well-being, as even in their
absence they tried to make the best possible arrange-
ments for them.
I thought it was important that the siblings could stay at
home, I didn’t want them to go from one set of
grandparents to the other, I preferred that they stayed at
home and the grandparents came to them. (Mother of a
girl, 5 years)
Although the grandparent’s care was usually practical
and exerted little influence on the relationship between
the parents and the siblings, one family experienced a
degree of estrangement between parents and child.
[Name sibling] has been with my Mum a lot at that time. So,
one time when Victor was doing very badly, I tried to go to
her. She was afraid of me and she crawled to my Mum . . .
(Mother of a boy, 6 years)
It seemed that this mother was rather upset by the obser-
vation that her child temporarily formed a closer bond
with the grandparent than with her. After all, every parent
wants their children to love them, even in the context of
pediatric cancer where parents feel obligated to focus
their time and attention on one child. Furthermore, after
treatment is completed, parents may have to deal with the
aftermath of this disruption to family life. Siblings may
have become accustomed to living with the grandparents
and difficulties arise when the sibling has to move home
again.
He got used to being with his grandparents all the time. And
it was very difficult to get him to come back home. (Mother
of a girl, 9 years)
The help and support the parents get from other family
members seemed to be necessary to fulfill not only their
own needs (i.e., spending as much time as possible with
the diagnosed child) but also the needs of the siblings.
However, grandparents taking care of the siblings may
also disrupt family functioning.
Not marital partners, just parents.  The focus on the diagnosed
child also has consequences for a couple’s underlying rela-
tionship. As both parents tried to accompany the diagnosed
child as much as possible to the hospital and divided their
remaining time between the siblings, their jobs, and the
household, little time was left to spend as marital partners.
It’s been either my husband who came here (to the hospital)
or myself, we always split it up, we were seldom here
together. (Mother of a girl, 9 years)
Parents rarely spent time together and they felt like their
lives as partners, beyond their lives as parents, had
disappeared.
We used to have many shared activities, like going to theatre
or making city trips together without the children. We really
tried to look for moments where we could “do our thing”
together. This became harder to do. Going out together
sometimes is a problem; we always ask ourselves “is she
ok?” Is anything wrong? She also fainted a couple of times
and actually that is enough reason to never leave her alone.
(Father of a girl, 16 years)
Rather than a lack of love, parents reported that worries
about their child’s health prevented them from spending
time together. In addition, most parents downplayed the
impact of the cancer diagnosis on the couple subsystem
and emphasized that this event was just one of many
affecting their relationship.
Whether many things changed? I don’t know, I don’t think
so. Let’s say we’d known each other for 15 years and now
we’ve known each other for 17 years. I mean, I don’t think
so actually. (Father of a boy, 4 years)
In contrast, for some parents, the disease did mark the
relationship and made the couple subsystem less clearly
defined. One parent described that their focus was redi-
rected toward the children, resulting in a greater emo-
tional distance between the parents.
Van Schoors et al. 1235
As a couple we are a bit distanced from each other these
days. While we used to feel like “we have our three children,
and then there’s us and then there’s the family.” Lynn, well
not Lynn but the illness, has meant that my wife and I have
grown a bit apart from each other, and that our focus is more
on our three children. (Father of a girl, 16 years)
So during cancer treatment, it became even harder to
combine a parental role with a partner role. Their love
and time for the diagnosed child was unconditional, even
at the cost of their own intimacy. However, despite these
obstacles, almost all the couples indicated that the cancer
diagnosis did not threaten their marital relationship.
Educational Norms and Values:
Overindulgence Versus Being Stricter
Overindulgence.  Parents indicated that the illness necessi-
tated a different approach to child-rearing.
You need to adapt your parenting style completely, not just a
little bit but completely. I don’t know, is it 180 degrees,
yes—otherwise we’re back, so 180 degrees. Completely
changing it. (Father of a boy, 6 years)
Parents started to indulge the diagnosed child more,
especially shortly after diagnosis. To justify this overin-
dulgence, several reasons were given (e.g., to compen-
sate for the suffering, to persuade the child to eat).
Furthermore, it seemed like this overindulgence was an
attempt not only to compensate for the illness but also to
make life easier (both during hospital stays and at home)
and to avoid family conflict. Given the demanding nature
of a cancer diagnosis, parents may after all lack the
energy to maintain their pedagogical principles. On a
couple level, couples mainly gave the same reasons for
this overindulgence.
Victor used to be raised quite strictly. We intended to do
everything like it should be done. No coca cola, dvds, ipad;
no nothing. In retrospect this was a stupid idea, but ok. The
advantage was that once he had to go to the hospital, he was
allowed for once to watch a movie and . . . Because there is
no other way, you need to keep him busy. (Father of a boy, 6
years)
With regard to rearing, I think it was harder to determine
what was allowed and what not. Victor was allowed to do
things that before I could never have imagined for a three or
four year old. But you need to keep him busy. That’s a form
of compensation. (Mother of a boy, 6 years)
Parents emphasized that this behavior occurred uncon-
sciously: Although they did not want to let go of all their
pedagogical principles and they did not want to favor one
child, the cancer situation forced them to do so.
Of course, the one who’s ill keeps on requiring your
attention. And that one will be allowed a little bit more than
the two others, unconsciously. You will protect him more.
But will you privilege him? Consciously? No.
Unconsciously? Yes, because he has gone through so many
things, our little boy . . . (Father of a boy, 4 years)
Parents seemed to make a distinction between rearing of
the diagnosed child and rearing of their siblings. They
were not only more concerned about the diagnosed child
but also indulged this child more. In rearing their diag-
nosed child, the parents had to consider the possibility of
losing the child, as well as their responsibility as a parent
to set limits. In contrast, when rearing any siblings, par-
ents could focus on their long-term responsibilities—
their strict behavior could be justified in the long run and
accidental conflicts could be resolved. In addition, this
favoritism was not only a parental concern but also it had
an actual impact on the siblings’ behavior. Some parents
described their other children as showing feelings of jeal-
ousy toward the diagnosed child, as well as resentment
that their parents’ attention was exclusively focused on
the diagnosed child.
The big ones resent me for that sometimes, especially [name
sibling], she tells Talia once in a while “Just because you
have cancer doesn’t mean that you can do everything” or
“that you can claim Mummy.” (Mother of a girl, 5 years)
In addition, an undermining of parental authority was
reported.
Even my authority is affected a little bit, I guess. Although
when I really tell him off, he takes it seriously. My wife’s
authority is affected dramatically. (Father of a boy, 12 years)
The fact that the authority of the main caregiver was par-
ticularly affected may be linked to the fact that they spent
most of the time together, and this caregiver was a daily
witness to the child’s suffering.
Being more strict than prediagnosis.  Although in the short-
term overindulgence may have positive effects on the
child (e.g., comforting the child) and the parents (e.g.,
avoiding conflict), parents were also worried about the
potential negative consequences of overindulgence on
their child’s development, as this may produce undesir-
able and immature behavior.
You feel compassion for your child, so you give in more. But
also, you realize “we’re aiming for recovery here, so after
this, we need to make sure that we can still manage him.”
(Father of a boy, 12 years)
One way to deal with this concern is trying to “find a bal-
ance” between overindulgence and setting rules.
1236 Qualitative Health Research 28(8)
It really is an adaptation and it’s difficult to find a balance
again. Because, he was so sick, you would, let’s say, allow a
lot of things. Punishing a child is something you don’t do in
that kind of moment. (Mother of a boy, 4 years)
Two things are notable. First, finding balance is hard.
Parents feel torn between an awareness of the dangers of
overindulgence and a desire to comfort their child.
Although the overindulgence may have a positive short-
term effect—it makes the child happy—and a negative
long-term effect—behavioral problems down the line—it
can be reversed with the adoption of a stricter approach to
parenting after treatment. Indeed, setting limits produces
desirable behavior in the long term, but may be difficult
to impose in the short term, as it may create conflict
between parent and child. Furthermore, it seemed that
this balance is only achieved after the intensive treatment
period. Rather than alternating between an indulgent and
a strict approach to parenting during the cancer treatment,
parents tended to indulge their child during treatment and
discipline them after the cancer treatment.
I realize that I’m more strict now, ’cause I think he was
spoiled last year and we need to make that right. (Mother of
a boy, 14 years)
Parents try to compensate for all the things they allowed
shortly after diagnosis, by adopting a stricter approach to
parenting than before diagnosis. Thus, both overindul-
gent and strict approaches are magnified in this context.
Normality: Loss Versus Preservation
Life will never be the same.  As a result of the cancer diag-
nosis, family life changed.
I have moved a stone in the river and the river will never
flow in the same way again. That’s a song. Actually the
illness is the same. We will always be that family, but this
has changed the flow and so it’s going to flow differently.
When Lynn is better, we won’t return to the same place.
(Father of a girl, 16 years)
And although parents emphasized that life would be dif-
ferent, most did not mention whether this change was
good or bad. For some families, the diagnosis even
improved their family functioning.
I’m gonna say something, but I know that at this point, it’s a
weird or misplaced comment: “I hope that in one year, I will be
able to say that in fact it’s been a very bad period, but it has had
a positive influence.” I can’t say I’ll be ‘glad’, because
everybody is suffering, especially Lynn. But if it has to be like
this, then we’ve done a good job and we can look back at the
course of treatment with satisfaction. (Father of a girl, 16 years)
When we looked into detail which aspects of life are in
particular changed after diagnosis, all families experi-
enced increased anxiety about the health of the diagnosed
child. Although previously child illness was just a part of
life, every sign of illness became a reason to panic.
Notably, this catastrophizing was only about the health of
the diagnosed child, and not that of the siblings.
In the old days, when the other two children had 40 degree
fevers, I didn’t panic. Now, with him, I panic: I will call the
pediatrician and I will insist that his blood is tested. (Mother
of a boy, 4 years)
Striving for “normality.”  Although parents realized that their
family life would never be the same as before, they recalled
a constant striving for normality. Parents tried to live a nor-
mal life, although the diagnosis had changed everything.
There were times when I thought everything was going fine,
that everything would be alright. I almost pretended as if we
had a normal life. (Mother of a boy, 6 years)
For these parents, “normal” seems to be the same as their
life prediagnosis. Striving for normality might therefore
be a form of comfort, creating a feeling of stability and
hope. Moreover, “normal” behavior and “normal” situa-
tions were seen as a blessing. Parents reported appreciat-
ing the smaller things more; they valued their time
together as a family more.
She is on a really strict diet. So one cannot go to a restaurant,
she cannot sit in the sun, nothing’s normal anymore. So when
something is normal, then it’s a gift from God. We’re not at
all religious, but it simply is a gift. (Mother of a girl, 16 years)
Parents made a distinction between the impact of the
diagnosis on themselves and the diagnosed child, on one
hand, and on the siblings, on the other.
The illness has had a very big impact and then again not,
because life did go on. For the other children, everything
needs to continue as normal as possible, their lives cannot be
turned upside down because our lives have been turned
upside down or because Talia’s life has been turned upside
down. (Mother of a girl, 5 years)
Parents strived to preserve a normal lifestyle for the siblings,
even though the impact of the cancer was undoubtedly pres-
ent. However, this “normal lifestyle” was based on going to
school and hobbies, outside of (changes within) family life.
Discussion
Pediatric cancer is a life-threatening disease, one that is
extremely difficult for the diagnosed child, his or her
Van Schoors et al. 1237
family members, and the family as a whole to adjust to
(Alderfer & Kazak, 2006). The aim of this study was to
explore how parents perceive changes in functioning of
the family after a pediatric cancer diagnosis, using
MFMIA (Van Parys et al., 2017). The analysis has pro-
vided insight into the conflicting dynamics parents expe-
rience in association with these changes. In the first
theme, Family Cohesion: Strengthened Versus
Fragmented, we saw, on one hand, that family cohesion
was strengthened by the illness, and that parents reported
valuing their family more. This is in line with previous
qualitative studies (Clarke-Steffen, 1997; Woodgate &
Degner, 2003), quantitative studies (Beek, Schappin,
Gooskens, Huisman, & Jongmans, 2015; Trask et al.,
2003), and systematic reviews (Van Schoors et al., 2015).
However, at the same time, the strength of the family unit
was threatened by an overwhelming parental focus on the
diagnosed child. Parents felt the need to shift all attention
toward the diagnosed child (cf. previous qualitative stud-
ies; for example, Prchal & Landolt, 2012), even at the
cost of time and attention allocated to any siblings, the
family as a whole or their couple subsystem. Consequently,
these parents may struggle to meet prevailing cultural
values and standards of “good parenting.” Indeed,
although West-European parents are expected to divide
their time and attention equally among all children, and
love each child equally (Ganong & Coleman, 2017),
these principles are challenged in the context of pediatric
cancer and may result in parental feelings of guilt, shame,
frustration, and distress (Long & Marsland, 2011).
Moreover, the parents in our study seemed to question
whether, in this context, a “good parent” is one that
accompanies the diagnosed child no matter what or one
managing to care equally for all their children. In addi-
tion, previous research into multiple roles (i.e., the role-
strain approach; Goode, 1960) has revealed that the
greater the number of parental roles, the greater the
demands and role incompatibility and the greater the
strain and psychological distress (Voydanoff & Donnelly,
1999). We could posit, however, that in the context of
pediatric cancer—in which one parental role dominates
all others—parents experience the same emotional strain.
Indeed, these parents indicated that their paid worker
role, their partner role, their friend role, and so on had
been subsumed by their parental role and their parental
duty to the diagnosed child in particular. Although this
predominance of the parental role may seem self-evident,
it may also give rise to negative feelings or thoughts, for
example, the idea that they are letting their other children
down (Grootenhuis & Last, 1997). In conclusion, the
findings of the first theme are consistent with those of
other studies. However, this study contributes to the cur-
rent body of evidence by showing that both subordinate
themes emerge at the same time, and that it is specifically
this dialectical experience that parents grapple with. In
the second theme, Educational Norms and Values:
Overindulgence Versus Being Stricter, parents described
the impact of the cancer diagnosis on the rearing of the
diagnosed child. As with the first theme, parents were
confronted with two conflicting dynamics. Specifically,
shortly after diagnosis, parents started to spoil their child,
a finding that has been reported in other qualitative stud-
ies as well (e.g., Enskar, Carlsson, Golsater, Hamrin, &
Kreuger, 1997; Norberg & Steneby, 2009; Quin, 2004).
Parents wanted to comfort their child and alleviate their
suffering. In addition, parents might want to compensate
for their own feelings of powerlessness. After all, a
stricter upbringing may seem irrelevant and undesirable
when their child is suffering from a life-threatening ill-
ness. However, at the same time, parents claimed to
believe that their child could recover and to be aware that
this spoiling may be beneficial in the short term but also
may produce undesirable behavior in the long term. Once
they had realized this possibility, they tried to compensate
for their overindulgence by being even stricter with the
child than they had been prediagnosis. Consistent with
previous research, this study found that this indulgent
behavior is only applied to the diagnosed child and not to
the siblings (e.g., Van Dongen-Melman, Van Zuuren, &
Verhulst, 1998). In conclusion, this study builds on previ-
ous search with the finding that both behaviors (i.e., over-
indulgence and being strict) do not appear simultaneously,
but rather occur in succession, as well as that both behav-
iors are magnified compared to prediagnosis standards.
In a third theme, Normality: Loss Versus Preservation,
parents described the idea that the family is irreversibly
changed due to the cancer diagnosis. This change in fam-
ily functioning has already been extensively documented
in existing research (see several systematic reviews: Long
& Marsland, 2011; Pai et al., 2007; Van Schoors et al.,
2015). At the same time, however, parents described
striving for normality. The concept of normality or the
life they led prediagnosis may comfort the parents, as
well as giving them hope and courage. In addition, par-
ents strive above all to maintain a sense of normality for
the siblings. They seemed to believe that by maintaining
normal routines, the impact on these other children could
be minimalized. However, research has shown that the
experiences of siblings cannot be separated from that of
the family (Carpenter & Levant, 1994), and that they too
can struggle to adjust to life postdiagnosis (Alderfer et al.,
2010). Therefore, we can posit that siblings may not
experience “normal” life but share the overwhelming
impact of the cancer diagnosis on the family. Future
research should try to document the experiences of sib-
lings postdiagnosis through in-depth interviews. In con-
clusion, this study not only confirms the major impact of
cancer diagnoses on family functioning but also
1238 Qualitative Health Research 28(8)
highlights parents’ desires to preserve normality within
their families and outlines the dialectical experiences of
parents postdiagnosis.
We aimed to resolve three specific limitations of the
existing research. First, by delving into parents’ personal
accounts of life postdiagnosis, we were able to understand
their perspectives on changes in family functioning in
greater depth, significantly contributing to the current body
of research. Second, we affirmed the importance of the
family level in the context of pediatric cancer, and its impact
on family functioning, and third, using MFMIA, we were
able to produce dyadic interpretations from the individual
interviews, using couples as the unit of measurement.
Methodological Considerations
Some limitations of this study need to be addressed. First,
as we report on a small-scale qualitative study of parents,
we do not intend or claim to be representative. Rather, we
tried to understand processes using a specific sample in a
specific context, which could help uncover some of the
processes underlying the impact of a pediatric cancer
diagnosis on the family functioning. Second, conform to
the requirements of IPA and MFMIA, our sample con-
sisted of a homogeneous group: Only parents of children
with leukemia or non-Hodgkin lymphoma were included.
Although this homogeneous sample can be considered an
advantage of our study, it is important to highlight that
parents of children with other cancer diagnoses may have
different experiences. Third, time since diagnosis varied
between the couples, ranging from 6 to 33 months. As all
parents were questioned about the first 6 months after
diagnosis, the potential biases inherent in such retrospec-
tive methods could have influenced their responses (e.g.,
forgetting, defensiveness). Fourth, we focused exclu-
sively on a sample of Belgian, Caucasian parents. As
Belgium is only a small country, it is likely that the expe-
riences of parents in other countries or with other nation-
alities differ (Chapple & Ziebland, 2017). In addition,
every country has its own system of medical insurance or
treatment procedures, which will also influence families’
experiences. Fifth, in this MFMIA study we focused on
the couple’s experiences after a pediatric cancer diagno-
sis. Although this approach has many benefits (Van Parys
et al., 2017), it does not take into account gender differ-
ences within a couple. Given that research has already
revealed that mothers and fathers may respond differently
to a cancer diagnosis (Hoekstra-Weebers, Jaspers, Kamps,
& Klip, 1998; Yeh, 2002), it is probable they would report
different experiences of the impact on the family func-
tioning too. Sixth, by focusing on the couples’ experi-
ences, we did not include the perspectives of ill children
and healthy siblings. Discrepancies in perceptions across
family members (Alderfer, Navsaria, & Kazak, 2009;
Peterson, Cousino, Donohue, Schmidt, Gurney, 2012),
however, speak to the need to collect data from all indi-
viduals. Finally, this study does not take into account
other family structures than nuclear two-parent families.
As families with same-sex parents, multi-generational
caregivers, and single-parent households become more
represented within the society (Galvin, 2006), more
research is needed to explore their unique experiences.
Clinical Implications
This study confirms the impact of a pediatric cancer diag-
nosis on the family functioning, as well as the necessity of
routine assessment of family functioning (Long &
Marsland, 2011; Van Schoors et al., 2015). Three specific
recommendations arose from the study. First, awareness
of the conflicting dynamics parents are confronted with
may help clinicians better understand these parents, while
helping them to normalize their own behavior and feel-
ings. For example, parents may feel guilty about devoting
disproportionate attention and time to the diagnosed child
and not the siblings, and/or about their difficulties in find-
ing a balance between indulgent and strict parenting.
Helping the parent to understand the extremity of the can-
cer context may therefore not only reduce negative paren-
tal feelings but also assist the child’s adjustment (Robinson,
Gerhardt, Vannatta, & Noll, 2007). Second, across the
three themes, parents made a distinction between the
impact of the cancer diagnosis on the diagnosed child and
themselves, on one hand, and their other children, on the
other hand. In the first theme, an increase in perceived
connectedness was only described between parent(s) and
patient, not with the siblings. In the second theme, parents
only discussed the impact of the diagnosis on the rearing
of the diagnosed child, and in the third theme, parents
indicated that in contrast to their own lives and the life of
their diagnosed child, the lives of the siblings were rather
unaffected by diagnosis. As a consequence, clinicians
should be aware of possible enmeshment between the par-
ents and the diagnosed child. Furthermore, together with
the parents, they can explore the meaning and impact of
the illness for the siblings and broaden the idea that a can-
cer diagnosis particularly impacts the parent–patient dyad.
Third, clinical work with families affected by pediatric
cancer should be aware that certain individuals and rela-
tionships might be vulnerable, for example, the siblings or
the couple subsystem. Throughout the study, siblings were
described as being on the periphery of the family. As some
siblings may also experience difficulties as a result of the
cancer diagnosis (Alderfer et al., 2010; Houtzager,
Grootenhuis, & Last, 1999), this subgroup should also be
addressed. In addition, as marital satisfaction may seem
secondary to the support of the diagnosed child, marital
issues may be overlooked by psychosocial providers in
Van Schoors et al. 1239
oncology or even downplayed by the couple themselves.
However, as these problems might negatively affect the
adjustment of the child and his or her treatment, it is also
important to screen for and remedy such problems (Van
Schoors et al., 2017).
Conclusion
The results of this study revealed that after a pediatric
cancer diagnosis, family functioning changes and that
these changes are marked by conflicting dynamics. Using
MFMIA, three themes emerged. First, the family is per-
ceived as a stronger unit, while at the same time fragmen-
tations occur within that unit. Second, parents struggle to
find a balance between overindulgence and discipline.
Third, the overwhelming impact of a cancer diagnosis
changes family life forever. However, at the same time,
families try to maintain a sense of normality. Clinical
work should therefore take into account these conflicting
feelings to better understand the experiences of parents
after a pediatric cancer diagnosis.
Declaration of Conflicting Interests
The authors declared no potential conflicts of interest with
respect to the research, authorship, and/or publication of this
article.
Funding
The authors received no financial support for the research,
authorship, and/or publication of this article.
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Author Biographies
Marieke Van Schoors, PhD student, is a researcher at the
Department of Experimental Clinical and Health Psychology,
Faculty of Psychology and Educational Science at Ghent
University, Belgium. She is also trained in psycho-oncology.
Jan De Mol, PhD, is professor of clinical psychology at the
University of Louvain, Louvain-la-Neuve, Belgium. He is also
clinical psychologist, family and couple therapist, and psycho-
therapy trainer in the domain of family and couple therapy.
Hanne Morren is a clinical psychologist at the Pediatric
Hemato-Oncology and Stem Cell Transplantation Unit of the
University Hospital Ghent, Belgium.
Lesley L. Verhofstadt, PhD, is an associate professor of family
psychology at the Department of Experimental Clinical and
Health Psychology, Faculty of Psychology and Educational
Science at Ghent University, Belgium.
Liesbet Goubert, PhD, is professor of health psychology at the
Department of Experimental Clinical and Health Psychology,
Faculty of Psychology and Educational Science at Ghent
University, Belgium.
Hanna Van Parys, PhD, is a reseacher at the Department of
Experimental Clinical and Health Psychology, Faculty of
Psychology and Educational Science at Ghent University,
Belgium. She is also a family therapist at the Psychiatric Unit of
the University Hospital Ghent, Belgium.